B.C. Industry News

Stronger voice for the B.C. public needed in health research

January 9, 2014

Opinion: ‘Patient oriented’: British Columbians have role to play in ensuring results are effectively used to improve care

By Colleen McGavin and Bev Holmes, Special to the Vancouver Sun

British Columbians have an important role to play in improving the impact of health research

The recent Vancouver Sun series on medical research in B.C. highlights some important trends in the discovery, innovation and use of evidence to improve the health of British Columbians. An important message in this series is that the pursuit of knowledge is most laudable when focused on solving society’s pressing problems.

The question then becomes — who decides which are the most pressing health problems and determines how they will be addressed? Currently, it is a combination of researchers themselves, review panels, health and non-profit agencies, industry and governments. Certainly these people work on behalf of the public and may consult them, but there are compelling reasons for getting the public more directly involved in shaping the health research agenda.

The Canadian Institutes of Health Research tells us that less than 60 per cent of bedside decisions on general medical services have the support of the required level of evidence, and up to 25 per cent of patients get care that is not needed or could be harmful. Can the public — as patients or potential patients, taxpayers, citizens, parents or any of the other roles we play as members of “the public” — help change these statistics? It seems likely. There is evidence to suggest that public involvement can improve the impact of health research and that the health research process can benefit from the experience and insights of the public. Apart from impact and quality, it is also argued that as citizens we have a right to be involved in publicly funded research that could improve or affect our health or the services we receive.

In B.C., work is underway to support public involvement in research through the development of a provincial unit that will, among other things, identify the needs of patients and the health care system, and fund research that addresses those needs. These “patient-oriented research” units are being established across the country as part of a Canadian Institutes of Health Research strategy.
Patients play a central role in a governing body overseeing the development of this unit in B.C.

With the creation of this unit, B.C. has an opportunity to develop a provincial approach to public involvement in health research, building on work underway here and learning from countries that are ahead of us with national strategies and organizations that have specific mandates for public involvement in health research.

For example, in England an organization called INVOLVE has a long history of supporting active participation in health research. Its new campaign, “Research Changed My Life,” features films, video diaries and written accounts from people who have benefited from involvement in research in various ways, from reviewing articles for publication, to designing and participating in research studies, to communicating the results of research, to participating on organizational committees and boards. The Patient Centred Outcomes Research Institute in the U.S. promotes the involvement of patients at every stage of the research process, from setting research priorities, to reviewing proposals, to partnering on research.

What could a made-in-B.C. approach to public involvement in health research look like? Based on models adopted in other countries, it could include training in public involvement — not only for the public, but for researchers and research-related agencies. It could include helping these agencies to change practice and policy so that involving the public in health research, where appropriate, becomes “the” way to do things. And finally, it could develop evidence on public involvement itself, to learn what works best and how to improve. A comprehensive, provincial approach to public involvement in health research should build on patient involvement in health care, for example through the Patient Voices Network — a community of B.C. patients, families, caregivers, and others who are using their experiences for positive change to the health care system.

Canadians believe in health research. Polls conducted by Research Canada show that the majority of us think research holds the promise of curing diseases, developing new drugs and improving health and health care. Involving the public in health research in B.C. — improving its quality and ensuring the results are effectively used to support good health and a strong health system — will bring us closer to fulfilling that promise.

Colleen McGavin is a representative of Patients as Partners | Patient Voices Network and a member of the interim governing council for B.C.’s patient oriented research support unit.Bev Holmes is vice-president, research impact for the Michael Smith Foundation for Health Research. The foundation is working with the B.C. Ministry of Health to develop B.C.’s support unit as part of the national Strategy for Patient Oriented Research.

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